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Surrogate Perspectives on the Communication and Support Processes That Enable Them as Active Decision-Makers Across
Amanda C Moale1, Douglas B White1, Bryan J McVerry1
1Division of Pulmonary, Allergy, Critical Care and Sleep Medicine, Department of Medicine (A. C. M. and B. J. McV.), University of Pittsburgh School of Medicine; the Department of Critical Care Medicine (D. B. W. and B. J. McV.), University of Pittsburgh School of Medicine; Family partner (R. G.), Pittsburgh, PA; the Department of Otolaryngology-Head and Neck Surgery (C. E. K.), New York University Grossman School of Medicine, New York City, NY; the Department of Medicine (M. N. L. and S. C.), University of Pittsburgh School of Medicine, University of Pittsburgh, Pittsburgh, PA; the Department of Geriatrics and Palliative Medicine (R. M. A.), Icahn School of Medicine at Mount Sinai, New York City, NY; the Department of Pediatrics (M. I. R.), University of Pittsburgh School of Medicine, Pittsburgh, PA; the Department of Pediatrics (R. D. B.), Johns Hopkins University School of Medicine, Baltimore, MD; and the Departments of Obstetrics, Gynecology and Reproductive Sciences, Internal Medicine, and the Clinical and Translational Science Institute (J. C. C.), UPMC Magee-Womens Hospital, Pittsburgh, PA.
Background:
Chronic critical illness (CCI) is marked by persistent respiratory failure, with patients commonly receiving tracheostomies for ongoing ventilation across ICU and post-ICU settings. Well-documented communication and support breakdowns across CCI worsen family distress and may perpetuate care misaligned with patient values and goals. Yet, effective interventions supporting surrogate decision-makers throughout CCI are lacking.
Research Question:
What are the communication and support processes that families view as essential to enabling them as active surrogate decision-makers across the patient's trajectory to better inform future intervention development?
Study Design And Methods:
We conducted semistructured interviews with surrogate decision-makers of patients who received a tracheostomy for persistent respiratory failure after an acute illness at 2 time points (first, 2 weeks to 6 months after tracheostomy; second, weeks to months later). We used deductive and inductive coding, followed by thematic analysis of interview transcripts.
Results:
We interviewed 23 surrogate decision-makers of 19 medical and surgical patients with moderate-high illness severity (mean Acute Physiology and Chronic Health Evaluation II score, 21.5 ± 5.3). Five themes were generated from family perspectives, representing the essential communication and support processes to enable families as active decision-makers across time and settings in CCI. They included being (1) engaged proactively during transitions; (2) connected to tailored practical resources that enable their presence, engagement, and space for self-care across the CCI trajectory; (3) actively engaged in ongoing and iterative anticipatory guidance and reassessment; (4) recognized as the expert and advocate for the patient; and (5) treated with compassion and respect.
Interpretation:
Our findings suggest that future interventions should deliver decisional support in CCI through longitudinal, relationship-centered strategies integrating iterative care planning, compassionate and inclusive family engagement, and tailored practical resources as core intervention components.
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